She is sleeping during her infusion today…while we are having a little party. Today marks 2 years that Joyanna has been receiving the infusion. I can’t believe it’s been 2 years. I asked my husband if we could say a thank you to the infusion center here at the hospital by throwing a mini party with some desserts and a small thank you to each of the personnel. We’ve received the opportunity to have our girl, be able to interact with her and see her smile for these 2 years and as many more as the Lord will give us because of the infusions. That takes a lot of work out front and behind the scenes. Many other families have had to wait years to receive the infusion at their home hospital. Joy was privileged to be the first child in the United States to receive it after the FDA approved it and here at our home hospital 15 minutes from our house. We don’t take that lightly. It’s been fun to have people stop in to grab a cookie and say hello. Other than all the excitement and desserts, the infusion is going smoothly as it normally does.
After this week, I’m turning my attention on getting ready for school. Joyanna needs all her uniforms ready to go and other things in place. She will be in a new school this year, but thankfully have the same teacher. There will be a few things that change. They shouldn’t be too hard to navigate. Please pray with us that the gait trainer that has been ordered for her will arrive before too long. She could really use it at school for her physical therapy sessions. This particular gait trainer helps her more than any of the others. Also, Ethan will be doing kindergarten via homeschool this year. I’m navigating (with my husband’s direction) through curriculum and what we will choose to do. I’m excited about the opportunity for him to really get into reading. He’s doing well and already loves books. I can’t wait until he has the confidence to begin reading most things. He’s going to start school just after Joy goes to school. Then the college will have their opening days and off into another school year we go!
It’s hard to believe that we’re coming up on a year that Philip has been in heaven. It’s coming to my mind more frequently as it draws closer. I’m guessing it will be a hard day, but the past might say differently. The days I expect to be hard usually aren’t. The Lord knows when we can handle the emotions, the grief, etc.
Oh, and for the vacation days I wrote about last post, my mother-in-law did come in but also my brother-in-law and his family. I knew when I wrote the last post, but just couldn’t say anything about it because it was a surprise to my sister-in-law here in town. She was surprised! We had some really great times with them. I nicknamed the vacation, “Time to Get Wet!” The four cousins spending their days together were all boys, 5 and under. Some days, we added the other 5 cousins (4 girls, 1 boy) that live near OKC. It seems every day, they were playing in the water somehow. All of us moms carried a change of clothes for them everywhere we went. They had SOOOOO much fun! We also went to the zoo, the splash pad, and back to the Gathering Place where they had so much fun that all 9 kids (and a couple of moms) slept all the way back from Tulsa. We played games most evenings, the cousins played well together and we even attempted a puzzle that was REALLY hard. Some of us worked on it off and on. Ben and I finished it after everyone left…except for the one missing piece. ☹ (which Ethan found on the floor 3 days after we finished it and had already thrown it away). It all turned out okay because I only paid $.49 for it at the thrift store. It was a beautiful puzzle with vibrant flowers. Very, very good vacation days. 😊
Hope you enjoy the rest of your summer, whatever that looks like for you! May God bless each day with the opportunity to know Him a little more and turn around and show Him to others.
Channels Only
How I praise Thee, precious Savior,
That Thy love laid hold of me;
Thou hast saved and cleansed and filled me
That I might Thy channel be.
Chorus:
Channels only, blessed Master,
But with all Thy wondrous pow’r
Flowing through us, Thou canst use us
Every day and every hour.
Just a channel full of blessing,
To the thirsty hearts around,
To tell out Thy full salvation,
All Thy loving message sound.
Emptied that Thou shouldest fill me,
A clean vessel in Thy hand;
With no pow’r but as Thou givest
Graciously with each command.
Witnessing Thy pow’r to save me,
Setting free from self and sin;
Thou who bought me to possess me,
In Thy fullness, Lord, come in.
Jesus, fill now with Thy Spirit
Hearts that full surrender know,
That the streams of living water
From our inner man may flow.